Writer's Note: Set the intention for a piece that’s redemptive. But also true.

It seemed to be a fundamental riddle, to create a piece about art, performance and healing... when healing in a chronically ill body is never finished, and performance is so ephemeral, so diffuse. How to capture this in an essay? So much as this body, this piece remains unsettled--between ecstasy and struggle, resolution and unwinding.

At some point, human experience leaves every person with aspects of their narrative that feel “unresolved”. This trauma. That failure. This person who never loved me back. Those forms of (physical/ emotional/ spiritual) lack. Struggle toward assimilation is a wildly universal force. Some of us hide it. Some of us can’t. Here, welcome the disabled as your mirrors, displaying authentic vulnerability, need, and emotion at unregulated times, breaking apart assumed roles and structures in their wake. Scary as shit, I tell you. Like wildfire. And also brilliant.

Photo of Sarah Muehlbauer by Elliot Polinsky

I started making art about the experience of chronic illness to locate and heal aspects of myself that couldn’t be absorbed in a logical way. No one wishes for disability. I did not. But illness in society became a fascinating puzzle for me, a series of human mysteries to solve daily/ weekly/ hourly/ minute-by-minute sometimes, much like the dilemmas I now solve on stage. If dealt with constructively, there are more wins than losses.As a creator, my simplest goal is to reveal something human as a gift to my audience. Something built from observation and experience. What is this? Illness roots me HARD to my basic needs. To moments of crises in 3-D reality. To the freezing and extending of time. To the feeling of flesh. To scar tissue. My hydration, my heart rate, my body temp. My neurons firing. In this body, I am bound to fluctuations in mental clarity. My joints. My adrenaline. My gut feelings. I ground daily to presence or absence of this pain or that. When my energy is high or low. When to rest or push. How many days I think I might have left on this earth... and how many of them might be good ones. I inhabit an excruciating, exquisite corpse. Much like any body’s. Much like yours.

In earlier years I seldom claimed to represent disability as an artist, in part because the experiences are so… normal. As a chronically ill artist, I crossed disciplines and collaborated often to explore psychological dynamics of embodied experience, with and through the creative lenses of my peers. Collaborator = translator. Naturally, these contemplations led to aspects of care, structurally and creatively, both given and received. I studied the body as an earthly home, as a site for the self, and as a dynamic physical object in the environment. The relationship between identity and body, body and environment, can be wholesome, fluid, gritty, perilous, calculated, playful, limiting, and endlessly changeable. For better and for worse. I think about this in the human-climate connection. If we use our responsible and dynamic creative force, then we can repair our ecosystem. But if we DON’T choose that... as bodies, as humans, we experience the outter world collapse, seemingly out of control, despite the structures we wished to rely on. Irreconcilable grief. Move to another planet. If that’s an option…

Disability experience is similarly double-edged, individually and in a collective environment. On a given day, I can approach my roles and abilities with the mental ecology of an athlete and an artist -- determined to create within the means granted at the moment, with an eye toward improvement and longevity. I can also approach (my self) or (my body) as a failure, a scapegoat, a social reject, a trash body. Something someone else should fix. A thing you can get rid of or leave behind. A descent. A divorce. A ghosting. In the late version, time expands where you don’t want it to, and contracts where you do. This is the place where the earth dies, and so do we.When I work with other artists and companies, my mind-body needs scream silently and grate against the fabric of our connections and expectations. It’s a 24/7 job introspecting deeply to monitor and form ready-to-go complex resolutions before/ after/ or during the space of communication. Labor mounts, sustainability talk takes on a languid pulse. Yet the healing also exists in this space. For all of us. And it’s not just in the breakdown of what needs to change, it’s in the active reconstruction. The artists’s mind stays curious, the athlete’s mind sustains.

Clear divides between professional and private life are often shattered in a model based on healing. The “uncomfortably close other” is held. The necessary labor of care is acknowledged, and the window is open for new questions. Here again we touch base with not just disability justice, but human healing needs more broadly… in the field of arts performance and in the performance of roles in our lives. Intimacy and productivity are drawn together gently like strings of a spider’s web, gluing cause and effect, strategic choice to physical and mental health outcomes. In the world of our creation, we show up with the stones in our shoes, our coverings and trappings, our flows and our stops. We are encouraged to do the unpacking. Introspect. Assert. Create. Sometimes the new ground laid will knock us off our feet. Grate against our skin. Slow us down to a pace we fear we’ll never recover from. But authenticity and respect are never wasted, and so too are creative efforts of any size. When working together, success lies in the quality of relationships, the individuality expressed by all, and the profound ripples of wild healing.

​-Sarah Muehlbauer

Post-script. This piece is illustrated by stills from the performance of “Ripple/Quake”, photographed by Elliot Polinsky. The live performance features the work of Dan Cole (video artist and musician), Anne Weshinskey (concept artist and performer), Simon de Aguero (tensile fabric designer), Will Turnbull (metal fabricator), Dan Bogan (musican), and myself, Sarah Muehlbauer (writer, spiderweb weaver, fabricator, concept artist, and performer). It was made with a Leeway Foundation Art and Change Grant (‘18), and the Leeway x Icebox Project Space residency (‘19) I received. Performances of “Ripple/Quake” were accompanied by free public workshops “Body Maps” (taught by me), “Yoga Nidra” and “Yoga for Chronic Pain” (taught by Elliot). More info about the original event is available on Leeway’s event page. To inquire more about the performance and workshops, or to bring them to your area, contact info.lionorfox@gmail.com.